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Worst Pain of 30+ BCG Treatments

9 years 10 months ago #28880 by Moonerj
I can not offer any more advice than you have just received.
I can share my experiences with BCG treatments.
During my 30 treatments, I did have 5 UTI's of which one was very serious and I did have to see an infection specialist.
The symptoms of the serious infection was different than the other four. No urgency and no burning like the other four, just pain in the bladder and the back. After 3 days the infection spread to my eyes and my left eye was swollen and I could barely see out of it. My GP sent me to the specialist within 2 hours I had an appointment, tests done, and was put on antibiotics for ten days. BCG treatments were delayed due to this infection for 3 weeks.
After the infection cleared, the specialist had me take cipro the day of and for 6 days following each BCG treatment. This was for my remaining 8 maintenance treatments. I suffered no further infections.
I hope your husband does not have an infection, but he should be checked just in case.
I have now finished the BCG maintenance and have been cancer free for over 2 years.
I wish your husband all the best, and many more clear cystos.
Jack

TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007

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9 years 10 months ago - 9 years 10 months ago #28876 by TheWifeAgain
Ahhhhhh okay I understand now. I was thinking of an Infectious disease such as MRSA or osteomyeltis which I have been battling for the past year.

We do have a very good relationship with an infectious disease doctor.

Thank you both very very much. I do appreciate your explanations.

Nix #24 for you huh? Just when you think you know what's going on and BAM! They toss us a curve ball.

I will update and let you know what happens. And Pat I am always sending you extra good wishes becasue you really deserve them.

Age 53 Currently
Bladder Cancer Diagnosis October 2006 T1G3
2011 Finally made it 6 month between Cystos
8/22/2011 Cysto in the OR
(BCG and BCG Maintenance over the years)
Graduated to yearly Cystos
Tumor found at first one year Cysto - TURBT 4/26/2013
Kidney pain - CT scan 5/1/2013

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9 years 10 months ago #28875 by Nix
If the symptoms don't clear shortly, the Infectious Disease Dr will be able to pinpoint exactly what the problem is thru tests that most Uros don't do. Don't forget BCG is a live virus that is used as the bladder wash, and different people (and bladders) react differently to BCG.This is the speciality of the Infectious Disease doctors. My own case, the 24th instillation caused BCG induced Interstitial Cystitis, which my Uro did not treat at all when I began to have trouble (because he doesn't see these reactions as much as an Oncology Uro.)
I would let your Uro know the problems and hope he can pinpoint how to treat, if there is no improvement, then I would seek help elsewhere.
Nix

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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9 years 10 months ago #28874 by Patricia
OK not saying this is it but its possible to be very sick and not run a fever.
Remember,you may have a fever or NO FEVER WITH SEPSIS !

What has happened is that the infection, has caused your body to have an overwhelming inflammatory response, that is affecting every organ in your body. IT MAY BECOME CRITICAL IF MEDICAL INTERVENTION DOES NOT TAKE PLACE
That sounds harsh i know...but don't take a chance..if the BCG has compromised the system you need to see an infectious disease specialist. You just don't want to take a chance with this. He will know how to diagnose whats going on..the uro may not.
The shaking and chills are a pretty good indication that something is going on.
pat

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9 years 10 months ago - 9 years 10 months ago #28872 by TheWifeAgain
Thank you Nix but I am confused as to how and or why an infectious disease doctor fits into this picture. Can you explain more please?

Age 53 Currently
Bladder Cancer Diagnosis October 2006 T1G3
2011 Finally made it 6 month between Cystos
8/22/2011 Cysto in the OR
(BCG and BCG Maintenance over the years)
Graduated to yearly Cystos
Tumor found at first one year Cysto - TURBT 4/26/2013
Kidney pain - CT scan 5/1/2013

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9 years 10 months ago #28871 by Nix
Hi,
I know Patricia would say "get to an Infectious Disease Dr." I would agre. But first, have you notified your Uro? I know with my own experience, I was doing fine with BCG - on my 23nd one, I had more reaction and a lot discomfort for 5 days, but on my 24 one, the BCG (at a reduced amount) put me over the edge.I did not run a fever but the pressure was terrible. I am still recovering - very slowly - and it has been 6 months! :woohoo:
My new Uro has already said with this reaction, I can't have any more BCG.
I would definitely contact your Uro, tell him all the symptoms, and ask him if you should see an "Infectious Disease Dr? or even recommend one for you. If he says "no, you don't need one", and you are not any better, I would find one and go, don't let this drag on like I did.
Good Luck,
Nix

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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